New Study Shows Vagus Nerve Stimulation May Reduce RA Symptoms

A new study has led to promising potential for treating RA through electrical stimulation of the vagus nerve.

Read more at RheumatoidArthritis.net.

New Study Brings Hope: Scientists Discover How to “Switch Off” Autoimmune Diseases

Scientists have made an important breakthrough in the fight against debilitating autoimmune diseases by revealing how to stop immune system cells from attacking healthy body tissue.

Read more at RheumatoidArthritis.net.

Fun Fact

Here's a fun fact! The Empire State Building will be lit up blue on Wednesday to honor the Arthritis Foundation and World Arthritis Day!

Steer Clear of Rocky Ford Cantaloupe

Remember the other day when I told you that the FDA had added warnings about the bacteria Legionella and Listeria to labels on TNF-blockers (Enbrel, Remicade, Humira)? Well here's a reason to be extra careful if you are taking TNF-blockers: it turns out that there is currently an outbreak of Listeria in Colorado.

According to the Center for Disease Control website, a total of 15 people have been infected in 4 states - 1 in Nebraska, 1 in Oklahoma, 2 in Texas, and 11 in Colorado.  The CDC has linked this outbreak to cantaloupes marketed as coming from the Rocky Ford region of Colorado. So, if you've got a compromised immune system, it's probably a good idea to steer clear of the Rocky Ford cantaloupe! King Soopers, Safeway, and Whole Foods have already removed the cantaloupes from their stores in the region.

If you've already been eating cantaloupe and you get chills, fever, muscle aches, or neck pain in the next few months you should head to your doctor right away! And that concludes my public service announcement!

Jeffrey Gottfurcht

On May 14, 2011, Jeffery Gottfurcht became the first person with RA to climb Mt. Everest!! Diagnosed with RA 10 years ago, at the age of 28, he decided not to let RA take this life goal away from him. He has also done amazing things for arthritis awareness, including starting a foundation to help children with arthritis live their own dreams: the Jeffrey Gottfurcht Children's Arthritis Foundation.

Considering the complaining I've been doing about my hips lately, his accomplishment is hard for me to even fathom. I mean, we're talking about Mt. Everest here. But he did it. And I find myself inspired. 

Just yesterday I was talking with a friend about whether I would ever be able to hike Half Dome again - a hike APL and I have each done separately that we have talked about wanting to do together someday. The hike takes you to the top of one of the most famous images in Yosemite National Park, which APL and I share as one of our favorite places on earth and is only a few miles from where we got married. But since my diagnosis I have had my doubts about my ability to hike 16 miles with about 5,000 feet of elevation gain - not to mention the cables you have to use to actually climb up the back of the dome. I've been wondering if I could ever have the hand strength, leg strength, and stamina to do it.

But if Jeffrey Gottfurcht can hike Mt. Everest with RA, surely a little planning and preparation could enable me to hike Half Dome if I really wanted to. Maybe Half Dome is my Everest - and maybe someday I'll get to accomplish that goal too.

(Heard of any other good RA Factoids? Send them my way and I will post them!!)

From The Desk of Captain Obvious

Discovered this delightful article today: Arthritis May Degrade Quality of Life. Hahahaha!! Really, Captain Obvious? You needed a study to determine that? 

Apparently they did:

People who have arthritis may have fewer days of feeling mentally and physically well and are more likely to feel generally unwell, according to a new study published in Arthritis Care & Research.

I know I've been all about increasing awareness lately, but is this really the best we can do?? People with arthritis...don't feel well?? Really?!?! How does a study like this even get funded!!

The article seemed so pointlessly obvious to me that I almost didn't read the whole thing. But I'm really glad I did, because on the second page I discovered this gem:

The authors also found that people with arthritis who admitted to frequent heavy drinking were less likely than non-drinkers to rate their health as fair or poor, and reported fewer physically unhealthy days. 

Hahahahaha!!! So if I have vodka for dinner I will be less likely to rate my health as poor or feel physically unhealthy?? Stupendous! 

Ok, ok - to be fair the study was quick to disclaim that heavy drinking is not recommended. But come on!! First you give me this terribly depressing headline about the degraded quality of my life, then you tell me that you have evidence that I will literally feel better if I drink heavily a little more often, but then you tell me it's not healthy to drink heavily even if it will make me feel more healthy?!?

What exactly is it that we've learned here, people?

Biosimilar? No Thank You

I know I complain on a fairly regular basis about the cost of biologics (like Enbrel, which I am currently on, and Remicade, which I used to be on). However, I have to admit that I haven't spent a lot of time looking into the safety issues associated with biologics. To be perfectly honest, this is mostly because it freaks me out, and my desire to feel better has been at a point where I'm willing to trust my doctors about the issue. 

In any event, APL found this interesting article about biologics in the Huffington Post. I thought the article did a really good job of explaining how biologics are different from other types of prescription drugs and highlighting some of the safety issues involved with attempts to reduce costs:

Biologics are different from typical chemical prescription drugs in important ways. Generic drug companies can make virtually identical copies of non-biologics like Lipitor and Prozac. Once the original drug maker's exclusivity period expires, generic drug makers can apply for FDA approval, piggybacking on the original company's safety and effectiveness studies, rather than spend millions to develop their own. As a result, the company can offer generic drugs at a fraction of the original cost, allowing patients to save dramatically for medicines of equivalent safety and efficacy. 

Yet biologics are different: just as no two living things are precisely identical, it isn't possible to create a truly identical "generic" version of a biologic drug. At most, a second-generation drug maker can create a version that is similar to, but not the same as the original -- thus the term "biosimilar." But depending on how similar it is, a "biosimilar" may or may not be equally as safe and effective as the original biologic.

The article then goes on to criticize pharmaceutical companies that are arguing for less stringent safety standards in the FDA approval of "biosimilar" drugs, with the justification that it will save on costs. I have to say that I tend to agree with the author. While I'm not thrilled about the high cost I have to pay to get the benefits of these drugs, I'm already a little bit wary about their safety and efficacy. And, as much as I want to feel better, I don't think I'm willing to risk my body any more to save a few bucks.  

Although I have to admit, the idea of using vampire bat saliva is pretty cool....

Credit for APL

I keep trying to get people to understand that my diagnosis of RA has affected APL's life just as much as it has affected mine. I know that isn't particularly easy to comprehend, seeing as I'm the one with the pain and the immune system that's going berserk. I'm the one needing to go to the doctor or stab myself with a needle or take 19 medications every four minutes. 

But APL has been there too, holding my hand, every single step of the way. Even though the RA is actually happening in my body, APL and I had a life and a future that changed dramatically with that diagnosis, and it has been equally difficult for APL to adjust to our new life as it has been for me. In some ways, I think it has even been harder for him. I mean, APL is helping me, but who is helping APL? I try, but sometimes I just can't.

Recently, at the Annual Congress of the European League Against Rheumatism (EULAR), a study was presented that had the same conclusion: partners grieve the RA diagnosis as much as the patients. (I found this study through a post on RA Warrior.)

My point being this: APL deserves a lot of credit, not only for helping me get through this, but also for getting through it himself. He is simply amazing and I am so lucky.

Helping Avoid "Arthritis" Confusion!!

After writing this post and receiving no response from the person that originally emailed me, my friend AJ suggested that I email the website directly to let them know that their marketing team was reaching out with inaccurate information. I decided she was right, and went to the "contact us" section to figure out who to email. 

Then I sent the Arthritis Foundation and the Ad Council an email commending them for their clear use of "OA" and "osteoarthritis" on the FightArthritisPain.org website, but expressing my concern about how the site was being marketed to people with blogs about RA. I said I didn't understand why the website had been so careful about focusing on OA and yet the marketing team was obviously emailing anyone with the word "arthritis" in their blog. I also expressed my concern that this type of advertizing would only perpetuate the confusion over what "arthritis" means.

I honestly didn't except a response. 

Which is why I was so excited this morning to see, not only a response, but an extremely positive one!! The email actually thanked me for contacting them and apologized that no one had replied to my first inquiries. Then it said:

You make some great points about the differences in the diseases and about making sure we are clear about the focus of the campaign both in our marketing approach and in who we market to. As you point out, osteoarthritis and rheumatoid arthritis are different diseases that, for the most part, target different demographics. We have subsequently reviewed our marketing approach and will only be reaching out to those bloggers who have osteoarthritis-specific blogs, general health and wellness blogs, or cover other related and appropriate topics.

Wow!! They have reviewed and altered their marketing approach based on my email? Awesome!! I'm really glad to have been able to make at least this small difference in making sure the confusion about "arthritis" doesn't get perpetuated, because I think that is really important - especially for those of us dealing with RA.

The email also included some RA-specific resources from the Arthritis Foundation. Seeing as I already ought to be studying instead of writing this blog post (grr....) I'm not going to (try not to) check out these resources until after my last final next week. But, in case any of you want to check them out now, here they are:

• RA Alliance
• RA Connect
• RA Discussion Boards

In Reporting Symptoms, Don’t Patients Know Best?

A friend just sent me an interesting article from the New York Times: In Reporting Symptoms, Don’t Patients Know Best? 

The column addresses whether doctors have a tendency to play down the symptoms and complaints of their patients. Apparently, research suggests that this happens quite often. The reasons a doctor may minimize a patient's symptoms are complicated:

The tendency to downgrade symptoms may be based on the doctor’s knowledge that a patient is in the early stages of an illness and could be much worse. Or the doctor may be making mental comparisons with other patients who are sicker….Sometimes the downgrading may reflect wishful thinking by doctors, who may think that a certain drug will help patients and don’t want to take them off it.

In any event, though the article is more specific to side-effects from drugs rather than treatment in general, I found it interesting. And a little scary.

Pain in the Keyboard

A study was recently completed about RA and computer usage. Patients with longstanding rheumatoid arthritis had their computer skills measured using the Keitel Hand Function Index, which assesses active range of motion. The study sought to discover which variables - impairments in range of motion, impairments in hand function, general activity limitations, or task-specific training - explain the most variance in keyboard and mouse speeds in computer users with rheumatoid arthritis.

Here is one article about the study entitled "RA Patients Maintain Computer Skills." Here is another entitled "Rheumatoid arthritis doesn't hinder computing skills." The title of that second article does not please me. I'd like to invite whoever wrote that title to try typing for three hours straight on a law exam, upon which their whole grade depends, with my RA hands and see if it "doesn't hinder" their computing skills!! (Grrr...) In any event, here is what the study found:

"A recent study by researchers from the University of Pittsburgh found that workers with rheumatoid arthritis (RA) were comparable to non-impaired individuals in keyboarding speed."

"The hand impairment experienced by many patients with rheumatoid arthritis did not significantly interfere with their computer use."

"Keyboarding speeds were found to be comparable with unimpaired workers, suggesting that most of the arthritis patients could be competitive in the job market."

First, I want to make it clear that I am not quite disputing the study itself. In fact, I would like to do everything in my power to encourage studies about RA and how it affects us. And I realize that there are limitations to medical studies. This study utilized 45 computer users with RA from an Arthritis Network Research Registry and tested specific keyboard and mouse tasks, measuring on a known index. If I were a medical researcher trying to figure out the effect RA had on computer use, I would probably start at about the same place.

But I do have some concerns with the conclusions made based on the study:

(1) There doesn't seem to be much acknowledgment in the study that RA affects different people in different ways. The study doesn't seem to recognize that some people with RA don't have hand pain at all. And some people still have RA but go into periods of remission without any pain. So, while I'm glad that those RA patients may not have diminished computer skills, I don't think you can extrapolate to say we all do. Any study about RA ought to recognize that the disease affects different patients in different ways.

I think it would have been useful to know (a) how many of the study participants usually experienced hand or wrist pain from their RA and (b) how many of them were experiencing pain in their hands at the time they took the tests. Just because you can type fine with RA one day doesn't mean you can type fine with RA every day. And what if your bad day is the day that important report is due to your boss? How competitive are you then?

(2) The average duration of RA among study participants was 16.7 years. This seems like a high average to me. Not to discount the pain of someone who has had RA longer, but it seems to me that if you have had RA for more than 10 years, there's a fair chance (hopefully!) that you've found the right meds/treatment for you and you are dealing with a lot less pain. Even if you still have pain, you've still had at least a decade (and for some study participants, two decades) to figure out how to deal with the pain - both physically and emotionally.

But what about the people who were recently diagnosed and/or haven't found the right treatment yet? Maybe I'm biased because I'm still in this category, but it seems to me that these are the people who are most at risk from loosing competitiveness in the workplace. If you've just been diagnosed, haven't found the right meds, are still in a pain, and still trying to adjust to living with RA, it seems to me that you might have more trouble using a computer than someone who has had RA for 16.7 years. But the study doesn't appear to address this issue at all. And sweeping conclusions like "RA doesn't hinder computing skills" makes it difficult for people adjusting to RA to get compassion in the workplace.

(3) My last big complaint is that the study doesn't seem to take pain into account at all. Just because you can type at a certain speed doesn't mean it doesn't hurt to do so!!! People with RA deal with pain all the time and as a result they are very tough. When you have RA, you can't just stop doing something you need to do just because it hurts - otherwise people with RA would never be able to do anything!! For example, I am wearing a brace on my right wrist right now because of pretty severe pain. But I've still spent half an hour typing this post because I'm skilled at ignoring pain. And, if your livelihood depends on it, you may just struggle through the pain a little bit more to keep up. But I don't think that means you should have to. Employers should be more understanding in the case that it hurts to do something, even if you can still do it. But, again, conclusions like "RA doesn't hinder computing skills" doesn't give anyone any incentive to be understanding towards people suffering from RA pain.

So I guess I do have a few concerns about the study itself, but mostly I'm upset about the sweeping conclusions in headlines that have come out of it. Again, those headlines make those of us with RA look like a bunch of whiners.

But we're not. We are tough. We deal with pain every single day. We work really hard to keep up. And we deserve some credit for that.

Please Try Again, ABC

I'm all about hope and finding ways to lead a full and happy life with my RA, but this article from ABC News almost makes it sound as if I really shouldn't have anything to worry about since I wasn't diagnosed 30 years ago.

Of course new developments and medications are exciting and bring us hope. Of course people suffered a lot more from RA in the past without these developments. But does that mean that RA patients today, particularly the ones still searching for the best treatment regimen (like me), are suffering any less from the pain and fatigue of RA? I don't think so.

To be fair, the article doesn't say new treatments will cure RA patients. It says we will be "much older when joint surgery becomes [our] best option." (Awesome. Now I feel better!) But the article says "today, although disease flares and progression can't be prevented entirely, doctors can now tell patients to expect long periods of remission."

Expect? Though I like to hope, I'm actually grateful my rheumatologist never said that to me. He said I might experience remission - that it was possible, not necessarily probable. And I think this is the mindset that you need to really deal with accepting RA into your life. What if you can't find the right treatment or it takes a long time to find it? You need to be able to get on with your life rather than being miserable until then. I think it is a little bit misleading to tell patients to expect periods of remission - and long ones at that. RA is a disease that never goes away completely, and that's something people with RA simply need to deal with.

The article also talks about a rheumatologist who "tells new patients that they can live normal lives." While it is true that someone with RA can certainly live a "normal" life, the important point to make is that it won't necessarily be the same life they were living before the diagnosis. Changes will certainly be necessary. Likely a lot of changes and probably some that you didn't want to make but don't have any other choice. Leading a patient to believe they can get back to whatever life they had before RA just isn't fair.

Frustratingly, the article also quotes a doctor saying "RA back then was a terrible disease." While I realize that the consequences of the disease were certainly worse "back then," is it really fair to say that the disease itself is any less terrible today? If I haven't found a treatment that takes away my pain and fatigue, am I suffering any less than someone "back then"?

I feel like the tone of the article suggests that RA today just isn't that bad, that you just take the medicine and that makes it easy to deal with, which I feel is misleading. Adjusting to a life with RA is a lot of work, and RA patients need support from their families, friends, the medical community, and from society as a whole. Articles that make RA look like its not that bad make those of us with RA look like a bunch of whiners, which I think can sometimes make people reluctant to offer help. But in reality, most people I know (in life or online) with RA are strong and can deal with a lot - probably more than they should - before they ask for help. Myself included.

Unfortunately, my frustration with ABC and this article grew even more when I saw that the author of one of my favorite RA blogs, RA Warrior, had not one but two of her comments removed from the article by ABC. I have seen Kelly's comments on other articles and she is always respectful, so I thought that was particularly frustrating. Why would they remove the comment of a polite dissenter? Without explanation? That's just disrespectful.

But, the good news is that Kelly and others with RA are doing what they can to teach the world the true story of what RA is like, to encourage people to provide the help and support that we need, and I think that is certainly something to be hopeful about.

::deep breath:: I need to stop feeling so riled up and get back to the mountains of homework I need to accomplish this week. If I can.

Actemra

APL just forwarded me an interesting news story about a new drug development on the RA front, which is always good news! The new drug is called Actemra and has just been approved by the FDA.

Though it is a biologic, like Remicade and Enbral (and Humira), it is the first arthritis treatment to operate by blocking the activity of a protein called interleukin-6 (rather than TNF).

So there is still hope out there for people having trouble with current treatment options! (Though perhaps don't look at the price tag, because that part isn't very hopeful.)

Read the whole story!

The Voices of Rheumatoid Arthritis

Today, my sister sent me a link to a feature about RA in the New York Times. It featured short interviews from six different people with RA. I thought it was really interesting to see the different perspectives of the disease from different ages and situations. But while the six perspectives were quite different, I still found that I could identify with what all of them were saying.

I think it's really great that the New York Times featured this piece about RA. Since RA can often be an "invisible disease" (i.e. "you don't look sick"), I think it's really important that people try to understand how difficult it can still be to deal with RA even when you appear to be perfectly healthy. One of the things I still struggle with is people not understanding why a 26 year old who looks perfectly healthy might be too tired to hang out anymore at 8:15pm. ~;o)

Thanks for sharing this article, little sister!